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  1. Hey all! I wanted to see if anyone out here is on higher doses of either acyclovir or valacyclovir for suppression as opposed to the standard dosing? It’s been a rough 2 years for me (those of you who have come across my posts know). I feel like lately I am not getting the relief I should unless I am taking 1.5g or 2g of valacyclovir daily. My doctor told me I can take 2g a day during my ovulation week since that is when I seem to have flare ups. I just feel like I’m constantly on the verge of an outbreak. I saw my OBGYN last week and was swabbed for bacteria and yeast but it was negative AND she said she didn’t see any “lesions” but something was DEFINITELY wrong down there. They called in brand name Valtrex for me which is going to cost me $125. I was going to suck it up and try the name brand for a month to see if it makes a difference but I cannot keep up with that copay. Why is this medication so expensive?! It’s so frustrating! Has upping the dose or changing how you take it make a difference for anyone?
  2. I HATE how doctors aren’t taking us seriously. I just had my bacterial and yeast test come back normal. I emailed my provider and asked for the topical acyclovir ointment to see if that will help speed up healing and the response I got was “yes everything was normal, I think the steroids you were on set the outbreak off. Keep on the same regimen and we will talk soon!” Are you fucking kidding me?! I am having issues with this far too much, something is WRONG. Why won’t they call in what I ask. I wish somehow EVERYONE with disease could get together and cause a revolution, bang down the doctors doors. We need to be heard and taken care of. If I had cancer I’m sure they’d try to help.
  3. I’ve read the trials should be done by May 2020 so 🤞🏼🤞🏼
  4. I’v definitely noticed an overall change in my health the passed few years. I het sick a lot more, my asthma is worse, and this virus has spiraled out of control for no reason I can think of. This time in my life I have not been stressed, I eat well, sleep well, exercises, take vitamins, lysine, supplements that are supposed to aid in herpes. I am scared to go off the antivirals because I feel like I would get more outbreaks and want to keep the shedding low and protect my husband as much as possible. At this point I’ve thought of leaving him as well because I never want to be intimate and am so depressed over this. I went just to the doctors because I thought all the antibiotics and 3 day prednisone I was just on started a yeast infection but my tests came back normal, and normal for bacteria. When the nurse examined me she didn't notice any lesions except MAYBE one area above my clitoris looked like one could be emerging, yet my whole vagina had been itchy, red and on fire. I assume its an outbreak from the prednisone and being sick. I was finally able to get a prescription for name brand Valtrex to try. A friend of mine only absorbs name brand medications so I figured I try it. I also asked for the acyclovir ointment to try down there. I’m desperate. I’ve been doing 2g of valacyclovir a day to try and speed up the healing and I do get relief from it when I take it so idk if I have resistance or not. All I know is when I was first diagnosed and got a typical sore every so often it was way less intense than this! I’m at a loss and trying to get an appointment with an infectious disease doctor. It gets to a point where it hurts to walk and wear pants, and all I want to do is sleep. It’s taking a toll on my life as a wife and mother. I have been researching a new drug called previtilir or something like that, it is in stage 2 clinical trials. I pray that it passes through to stage 3 and will be able help us. The suffering with this is immense. I just want a better quality of life!
  5. I am suffering greatly as well. I’m 34 and two years ago this disease has made my life spiral out of control after not having any affect on me for 8 years. Where ate the clinical trials for that drug? I am so desperate at this point.
  6. Are you having just oral outbreaks or genital outbreaks as well? I would give anything to have this on my mouth instead of down below. Valacyclovir worked for me for 8 months and being sick has set me back I think. I get sick a LOT, which makes me think I have an immune problem, but, I’ve always been sick a lot so I don’t know why all of a sudden I can’t fight us. You are around the same age as me, I’m 34 and I started to wonder if I was going through perimenopause even though I’m young for that because I read the herpes virus can become a pain during menopause because of your hormones. I made an appointment today to get swabbed and see if I am resistant to the antivirals. I’m also going to ask for a referral to an infectious disease specialist because I cannot take it anymore.
  7. I agree this is DEFINITELY more than “just a skin condition” and I wish doctors would take it more seriously and really try to find something to help us with this. The reason I think I have something wrong with my immune system is because I am sick constantly, at least every other month I am at the doctors. If I don’t get on antibiotics I end up in the ER because of my asthma that has gotten so severe in the passed several years. I just don’t understand how out of nowhere this started happening. So frustrating. I’ve been trying to find clinical trials somewhere because I’m desperate.
  8. @Fmals When I was diagnosed 10 years ago I was not on suppressive therapy for about 2 years. I would get a “typical” outbreak, a single sore in one spot that would break through the skin and eventually scab over. That happened every several months and was nothing compared to what I’m experiencing now. I was on suppressive therapy for about 8 years until the acyclovir stopped working out of nowhere. I suffered every month for a year horrible outbreaks which at first I thought were chronic yeast infections. I switched to valacyclovir in January and was good up until October when I was ovulating, then I got sick and was on 2 different antibiotics and prednisone (which I only took 3 days and have been on it in the past because of my asthma and did not have a problem). So 3 weeks from my last outbreak I now have a bunch of little sores all over my vagina, I am extremely itchy and irritated, inside looks raw and red. I made an appointment at my doctors for this afternoon and I’m going to ask for a referral to an infectious disease specialist. I just can’t take this anymore.
  9. I just really need to vent right now. In January 2019 I switched my antiviral to 1g valacyclovir daily. I was fine up until the end of October when I had an outbreak, this lasted about a week and I usually add half a dose to my meds at night. Well here I am 3 weeks later with another awful outbreak! I was just on two courses of antibiotics and three days of prednisone (which is evil if you have herpes) for asthma and woke up to itching, redness, irritation all over my vagina. These outbreaks are fat worse than any that I had when I was diagnosed 10 years ago. I went 8years outbreak free and then all of a sudden this virus is back with a vengeance. I am literally losing my will to live and and trying so hard to fight through it for my 11 and 6 year old. The constant physical and psychological pain is becoming to much to bear. Why is this happening?! After 10 years my body should be able to fight this off. Why has this gotten worse? Why aren’t the antivirals doing their job? I feel lost and alone...
  10. I don’t know if it is type 1 or type 2 but it comes out genitally. My doctor swabbed a lesion years ago but never said which type it was and when I asked he said it “didn’t matter, they both present themselves the same way.” Very frustrating. Where did you read about a new vaccine? I pray to God for one every night, a vaccine, better medication, anything to alleviate the constant physical pain. Every thing the old textbooks say to do to combat this I do religiously, eat well, sleep, exercise, the supplements, nothing helps. After finding this forum and realizing that there are so many of us experiencing this you would think that the doctors would start listening and trying to find a way to help us instead of just brushing us off. I’m hoping an infectious disease specialist can help me. I’m starting to worry that there is something severely wrong with my immune system.
  11. @TreeHugger44 I can completely relate to you! I am losing the will to live and am trying to be strong and fight through the constant outbreaks for my two children who need me to be here. I’ve had GHSV for about 10 years and in the beginning it was no where near as bad as it is now and all I read is this is supposed to get better. Crock of shit! I was on suppressive therapy for 8 years and it worked wonders until about 2 years ago the meds just stopped working without any explanation. I’m 34 now and have been living in hell for 2 years. I switched to 1g valacyclovir in January and got some relief for about 8 months but now again I feel like every 2 weeks I’m getting outbreaks. I double up on the meds so nothing ever breaks through the skin but I can see and feel them under the skin. It makes it so hard to enjoy life. I am constantly irritable to my children and family. I don’t know what else to do. I made another appointment with my OBGYN and am going to ask for a referral to an infectious disease specialist. I’m at my wits end. Resistance to antivirals is so low but for some reason I feel like I’m in that .03%.
  12. @Irishgirl Thanks, I will try it. Now that the swelling and irritation have subsided I noticed small, tender, pimple like bump near my vaginal opening which I assume is a small sore but I was able to pop it so idk if I got it from shaving or if it’s an actual herpes sore. I’ve been taking 1.5g of valacyclovir for the last week so idk why this is happening like this.
  13. @Lacey Hi. I’ve had the virus for 11 years now. In the beginning I would get a typical outbreak, a sore somewhere on my labia that would eventually scab over and heal, every 2 months. I wanted a better quality of life so I started suppressive therapy. For 8 years on alcyclovir 400mg 2x a day I had zero symptoms then all of a sudden 2 years ago I started getting horrible outbreaks like I never had before. I switched to valacyclovir 1g a day and it has helped, however, every month when I ovulate I start having horrible symptoms, burning, irritation, redness of the vagina. I take an extra 500mg of the meds during that time and nothing ever breaks through the skin but I’m so uncomfortable. I’m seeing my doctor Monday to check for a hormone imbalance. I have no idea what is going on. This virus is supposed to get better over time and for me its gotten so much worse. I also take 2-3000mg of Lysine a day and vitamins, eat well and exercise and get enough sleep. Makes no sense. I’m so scared to be intimate with my husband because I feel like a walking contagion and he is negative. Is your husband negative? Do you have typical outbreaks? Feel free to private message me if you want 🙂
  14. @Sunshine75 I’m only 34yrs old, but, I have noticed that my vagina has not been lubricated as normal for the passed year and a half. Idk if it has to do with these symptoms or not. I saw my PC today and she couldn’t understand why this is happening monthly and said my OBGYN can test my hormones when I see him. She called in name brand Valtrex for me to see if my body will absorb that better instead of the generic. She also said some people have to take (2) 1gram pills a day to work and said to do that when I start feeling these symptoms. I feel like the doctors don’t know what to do or say except give textbook like answers. Theres so many new meds out there for all kinds of diseases but people with HSV haven’t had anything new in so long! So frustrating! I also have had a small, hard, white, bump the size of a needle head on my clitoral hood for a month. It doesn’t hurt and hasn’t changed in size. No idea what it is. I don’t think it’s herpes. I can’t help but think that from the years on the antivirals the virus has mutated or something or has become immune to the meds, but when I increase them the symptoms get better.
  15. I just assume it’s an outbreak since it’s happening every month when I ovulate. I become very red and sometimes it looks like there may be something underneath my skin but it never breaks through and when I increase the antivirals for several days the symptoms will subside. When this happened back in January I went to my doctor and she did swab me for bacteria and it came back negative but when she looked down there she did not say it looked like an outbreak either so idk what’s going on but it is so incredibly frustrating 😒
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